When you want to give up, but can't.

merri

The last time I posted, things were moving forwards. My RA was still not under control and was very severe but my medical team were moving me onto tocalizamab infusion, as a number of other drugs hadn't worked, even in conjunction with one another. That was around Christmas.

Unfortunately I was involved in a small car accident over a month ago, which sent my RA into an unprecedented freefall. The pain went from my normal 7-8/10 to 9/10 and when I went to A&E, they offered me Oramorph followed by an admission for IV morphine. Stupidly, I went home as the hospital wasn't too clean, but was told to return if I wanted to be admitted.

4 days later I was back in A&E as I couldn't cope anymore. They refused to admit me, telling me instead to double up on Diazepam and Oramorph. I was taking 1500 Gabapentin,Oramorph plus my 20mg BuTrans patch and 1800mg Ibuprofen and still had a pain level of 9.5-10. The next day I couldn't keep anything down, meds included. They wanted to admit me for IV fluids but I refused as wasn't confident of the care I'd receive.

In the interim 3 weeks my rheumy nurse has been trying to organise IV steroids but I'm still waiting. The funding has been approved for my toc infusion, but again I have to wait until the day ward can fit me in, which can be another 3 weeks minimum. In the meantime I'm trying to manage the pain which tends to be between 8.5-9 daily, and I'm really struggling. When the pain is at my normal level, it's fine, I can manage that and can carry on doing odds and ends here and there but this is something different.

I'm finding it so very difficult to cope. I drove the car earlier for 10 minutes and the pain ramped up to 10/10 again. I called the AC helpline,earlier today in desperation, hoping to find someone who would listen and understand but when I tried to explain, I was told "the good thing is that your funding has been approved." Yes, it has and I'm very grateful for that, very grateful but the thought of living with this level of pain until the infusion is organised is unbearable.

I also have Fibromyalgia, and my RA causes both costa condhritus (inflammation of the tissue between the ribs) and tendinitis around my joints.

I want to give up, I really do.

barbara12

Hello merri
I can hear the pain...the car accident has really set you back,and no wounder the shock wouldn't have help.. I do hope they get back to you very soon with the injection, at least this might get you over till you start on the.infusions..have you tried ringing them..sometimes you have to shout to be heard ..I hope you can get some relief very soon...

GraceB

Sorry to hear you are in so much pain. It really gets to you doesn't it?

I'd try phoning to explain the urgency of you needing the transfusion. Also, have you spoken to your GP? Could you go to a different hospital if your nearest one doesn't fill you with confidence?

I really hope you can get something sorted out and soon. I wish we could do more, but apart from moral support we cannot physically do anything for you and that makes me feel so bad for you.

Take care,
GraceB

theresak

Sorry to hear you are in so much pain - the car accident certainly will have taken its toll, on top of the RA. Are you able to phone your consultant? My rheumy gives out a card with her direct line for emergencies - she might be able to facilitate an earlier infusion.

merri

Thank you very much for the replies.

I called the biologics department this afternoon about 3.30 but no reply. I'd not thought of calling the consultant, though it goes to his secretary and he's never called me back to date, though there may well be a first time, thank you for that.

I've spoken to the GP but he is way out of his depth on this. He wants to examine me, but won't do a home visit despite me being unable to get to the surgery and being within his surgery radius.

There is another hospital but it's 25 minutes away so an ambulance (if called when the pain is 10/10) wouldn't take me there. It's a real fix tbh.

stickywicket

(((()))) Oh merri, I have nothing to offer except sympathy. Of course the car accident shook everything up. There ought to be a law against these things happening to arthritics but, alas, there isn't. I hope things move more quickly than you fear and that the new treatment does its stuff quickly. Meanwhile just hang on in there and rest as much as possible.

dreamdaisy

We're a couple of days on now, how are things? DD

charleeh

Hi Merri,

How are things going now? Have you had your first infusion of Tocilizumab?

I have been on the drug for a few years now and it has worked well for me thus far, it did take a while for it to settle in but keep the faith with it.

As for the costochondritis you have my deepest sympathies - I too get that, its so painful no matter how you sit, lie or stand or breathe in or out. My only method of coping with that is sitting in an upright straight backed chair and breathing very slow soft but long breaths.

I use meditation to help me cope with my pains- I find it to be so helpful, I couldn't cope without it..... however, when you have had no sleep and are riddled with pain I understand the last thing you want is a voice on a cd telling you to relax and soften your body!
I find its best to develop a good meditation practice so that when your pain is bad you can slip into it straight away without much practice.

I hope you feel better soon, and I hope the TOC works for you too.

sending lots of love,
charleeh x

merri

Thank you for thinking of me. I do practise meditation, especially when the pain is at its worse, just a shame it reaches such unbearable levels.

I do plan on writing a letter to the pain consultant as she advised me that there was only IV morphine left, when there were other drugs that could have been suggested. I found out about these afterwards.

I had my first toc infusion last week and I'm keeping my fingers firmly crossed. The pain is settling slowly, down to 8.5-9/10 and I'm rather so very glad.

Thank you so very much for your replies, they really mean a lot to me xxx

stickywicket

I'm so glad it's helping, if only a little.

Well done, you, on organising your pain control while in such a great amount of it. Thinking clearly is hard enough when we're not beset by gusts of pain, let alone when we are.

merri

Thanks SW I have a number of letters to write as while the NHS is a bloomin' fantastic resource, I feel utterly let down in the care I had during such a horrific time.

I also have to challenge a PIP decision as despite being bed bound when the assessor came, and stating that I am house bound 50% of the time, in her report she stated during the examination I was able to walk 50-200metres. Erm nope lol. So it's a busy time here at the moment with trying to organise letters to the consultant, gather evidence to show how poorly I am with Disease Activity Scores, Blood test results and diary entries, go through the medical report with a fine toothed comb and also make a complaint about how Capita were not only are in breach of their own guidelines but also misrepresented the facts.

It's rather stressful tbh.

stickywicket

Blimey! That does sound stressful. Take your time and don't pressurise yourself. Good luck with it all.